discovery – Lets Talk Cancer

bravery, cancer, discovery, happiness, health, strength

Me 1- Cancer 0

Posted on January 7, 2017January 9, 2017 by LetsTalkCancer

My travel, for the most part of the last two and a half years has been because of cancer. Either for it or from it. I globe trotted to London for almost a year for treatment, but also domestically to Delhi, Hyderabad, across Bangalore and other cities. There were leisure trips too, but now I was finally travelling for fun, love and life.

For my best friend’s wedding.

When I was announced as the Best Man, I was bestowed the responsibility of planning his bachelor party and given that it was an Indian wedding, the dance performances. He lives in the UK, so I coordinated with his friends in Bangalore, Birmingham and family in Kolkata for the wedding details. I thankfully had a year to plan all this and honestly, I needed the time. With my erratic health and susceptibility to anxiety, I could do things at a calm pace.

The biggest challenge for me was to feel well enough to enjoy the celebrations. This wasn’t easy. While 2016 began splendidly with good health, new job and things going in the right direction, I had a mastectomy surgery, increase in brain lesions resulting in radiation and a line of treatments from June till September that didn’t suit me and sapped me of all energy. I was on bed most of the time and had to quit work too. The next treatment that was recommended wasn’t going to help me either. I would lose my hair, my immunity, be unable to eat out and pretty much be confined to the bed.

That’s when I decided that the type of treatment I receive should not be a hindrance to the kind of life I want for myself. After all, cancer shouldn’t be controlling me; it is only a small part of who I am and not what my life should revolve around.

Thus, began my war against the treatment. I was clear that I will attend my best friend’s wedding looking normal, with hair, strength and the ability to do all things others can.

And I did. I also lost my desired amount of weight so I felt confident and great!

We went to Goa for four days and I took part in all the water sports, ate in shacks and even had some drinks. Para sailing, banana boat, kayaking, snorkeling, dolphin sighting and then swimming in the middle of the sea surrounded with nothing but water. Enveloped with friends, sun and a festive atmosphere. What more could I have asked for?

The wedding was loads of fun and I could be a part of all the functions. The DJ nights for dancing on Bollywood and Punjabi songs, mehandi function, next day engagement, then baraat and reception. Everything was a highlight. Yes, I did get tired faster than others and needed to sleep longer, but only marginally. I don’t think that anybody could tell that I am battling cancer and that is very important to me.

Before the functions, I had nightmares that my wig would go flying while I am dancing or that I would get tired and faint in front of everybody, but thankfully none of that happened.

image2-3 — My best friend- the groom and me. My wig didn’t go flying while I was dancing because I didn’t wear one. Part of his many demands.

This success would not have been possible without mom. She understood the importance of me attending the wedding as Sonia and not a shadow of myself and stood by my decision of not letting cancer dictate my life terms. It meant her having to fight the doctor, make family and well-wishers understand my rationale, and that’s not easy. It’s not easy to take a break from treatment or refuse treatment while battling cancer, but we braved that.

From the day my cancer was diagnosed, mom has been my biggest support. From taking my temper, tantrums, me crying to eat non-vegetarian food, refusing to get chemo because I am not in the mood, having food cravings and ordering biryani from local joints, all without a complain. She also manages the house, her business and various jobs, liaises with the numerous doctors I am connected with, identifies and understands my often-changing treatments, raises funds for my medication all alone without batting an eye.

All I am expected to do is turn up, take treatment and stay strong. Everything else is handed to me on a silver platter. I don’t believe much in religion and my spirituality is shaky. But I believe the universe gives you what you want and she is my universe. My fairy, my angel, my God.

She has let me keep a puppy though I am unable to care much for him myself [my brother is the primary carer] because she knows how much I love animals.

Because in these 28 years, there isn’t a single wish I have made that my mother hasn’t made come true.

Our tradition of morning tea and coffee, and eggs together at night are precious to me. We go for all movies and food outings together. She is my soul; my gossip partner and I am nothing without my mom. We always say to each other that it is dangerous to love someone so much. But there are very few people on a bad day who can motivate me to keep fighting cancer. She is the first of the top five people in my life, all others come later.

So, as I end 2016 with a bang, now looking for the next thing to obsess over, I want to dedicate my blog and life to you mom. It wouldn’t have been possible without you.

I don’t know what 2017 has in store, but with mom by my side, I can continue fighting cancer with the same resilience as day 1.

bravery, cancer, discovery, happiness, health

Cancer, My Gift

Posted on July 30, 2016August 7, 2016 by LetsTalkCancer

People from social circles are getting married and having a child or two. They’re snorkeling their way through family bliss. There are others who are sky diving into their careers making a meaningful entrepreneurial life for themselves. Then there is me; happily unmarried and non-committed, floating through the abyss, rather jobless at the moment, sitting with my feet up against the wall, relaxing with my baby pug Chulbul while I read a book on my Kindle and nibble on a snack or two.

But I am also celebrating a very special occasion. It’s my second anniversary! Two years in the cancer universe. Woohoo! Thank you, thank you.

This special moment has left me misty eyed and I can’t help but put my book down and conjure up revoked memories of the time passed.

Cancer Diaries – 2014

Salary hike. ‘Employee of the Quarter’. New job opportunities. Possibility of a romantic relationship. Lost weight and looking fine. Family doing well and me sitting on a shooting star that was going towards the land where all dreams came true… Or so I thought.

In January ’14, when I discovered the lump, my predictable reaction like any 21st century human was to refer to Dr. Google. The 3:00 am investigation concluded as breast cancer and I went crying to mums room giving her the news. She was quite perturbed and probably thought the conversation was her hallucination given my abrupt entry and drama during the darkest hours of the night.

Long story short, I got an FNAC and ultrasound which diagnosed me with Fibrodinoma. Apparently very common among women my age [evidently not] and after a 10 day sample of a stressful life, mine was a happy and normal one again. Who would have thought that the sample was just a trailer of what was to follow?

It was silly of me to not have realized that a growing lump could be a sign of cancer and I still feel very betrayed that the doctor didn’t take the opportunity to educate me on the symptoms or call for a follow up.

In July when the lump had grown uncomfortably large, I told mum I need to see a doctor again and I’d be lying if I said I wasn’t expecting cancer to be the diagnosis. Somehow it had haunted me since January anyway.

There it was – Malignant positive! High grade cancer. The sentence that demolished me. What followed was an abrupt exit from my job, shattering of dreams, ego and vanity, loss of interest in the romantic relationship I was pursuing and running to doctors, trying to comprehend what was going on. Will I live? Will I die? Was I already dead? Is this a joke? Please be a joke. I am too young for this and cancer certainly does not go well with my image.

What followed was a series of extremely brave steps from me. See, I have always been at the epitome of health since a young age. No fractures, bad accidents, illnesses or visits to the hospital until I was diagnosed. [Except when I was admitted for food poisoning and then banned for the ruckus created while they inserted and removed the Iv]. Therefore, needles and medical centers were largely alien to me and my fear of pain very real.

I do feel fate has a role to play and maybe the destiny of our lives is predetermined.

I had got a tattoo done on the nape of my neck in 2012 to get over my fear of needles [what a random rationale]. It feels like a mock of kismet that this very tattoo helped me realize that though I don’t like it, my threshold for pain is high enough to get through treatment. Funny how certain incidents intertwine into the fabric of our life to make more sense later.

I am very proud of myself for starting treatment with no tears or fear; except when I lost my hair. My doctors, nurses,support group, everybody said I was brave with the way I was handling my horror movie and that watching me gave them strength. I don’t understand what that means. Maybe I wasn’t cognizant of what was being taken away from me and what I was losing as a consequence of this disease. But I guess my detachment helped me live each day at a time and get through treatment with blissful ignorance.

Yes there were side effects to the treatment like heat flushes, nausea, weakness, restricted diet and I also experienced a bout of depression and major mood swings during one period. The death of my rabbit, my baby, my life, came as the rudest shock that I couldn’t cope with. It was the first big thing cancer had taken from me and my darling had to suffer because of my disease. I wasn’t there when he passed and that hurts me even today.

But apart from that, I think my life was great. I also got to travel to London for treatment.

Sight seeing, Winter Wonderland, New Years Eve celebrations by South Bank, Christmas dinner.. none of these experiences would have been possible without my cancer.

Summer- ’15

I had attended my dearest friends wedding and wore a gorgeous saree. Her wedding was an occasion I had been planning since we met in 9th grade and being a part of those beautiful celebrations was a dream come true. But back to treatment- I’m in London again! London is fantastic during summer, amazing weather, lovely sightseeing and Wimbledon! Center Court tickets to Andy Murray vs Vasek Pospisil and then the Djokovic vs Cilic match. What a fantastic day of quarter finals!

What more could I ask for? Meeting friends, pub hopping, devouring chips, Mugs of Pimms and Dissaronno, Nandos, Udon Noodles at Wagamama and my favorite weekend outings at Camden town. Of course, the fact that Oxford Street was two streets away from my hospital helped a lot too. Ahh life was a fest and I was there for my best friends birthday too!

So what if I was diagnosed with brain metastasis towards the end of the trip? I’m still alive and kicking aren’t I? From almost going into remission to getting a horrendous news, Summer of ’15 embedded every possible emotion within it. I came back, sulked over my fate for a wee bit but then picked myself up and started working by the end of the year.

Summer ’16

I don’t work where I began at the beginning of the year anymore, but mum is opening her beauty salon and make-up studio next week and I will help her with that. That will be our latest adventure.

I don’t look the same anymore, I had a mastectomy surgery finally and feel liberated from that horrible haunting lump after two years. I didn’t get the reconstruction done as the surgery isn’t curing me.

I have put on and lost weight so often in this interim that I have ugly stretch marks.

Hence, with my bald head, single breast, and disproportionate figure, my vanity is below the poverty line and any hope of a relationship or marriage are presently out the window. But I don’t doubt for a moment that I am beautiful. I am!

Yes, I miss having someone to hug and call mine, but I’m glad I was single when I was diagnosed. I wouldn’t want to put the person I love through something as intense as this.

As I am sitting back right now, I won’t lie that I feel like a burden on my family. Cancer is an expensive disease and now after 730 days, the cracks begin to show. Private treatment in Central London wasn’t cheap. Nor are the tests, alternate therapies, living expenses and sundries. I wish I could take the pressure away from my parents. Or at least go into remission so that treatment can halt and I can resume being an asset rather than a liability.

But it’s something I don’t have control over. Maybe it’s karma. Maybe I attracted this so I am paying my dues, but that is fine. Life is Yin Yang and I have so much good come my way that focusing on the negative is very difficult.

My best friend is getting married at the end of the the year and I am his Best Man. From planning his stag do, to the dance performances at the functions, to my outfits; I am obsessed with the occasion and that’s keeping me going full throttle.

My soul sister will be getting married next year and then I will be obsessed with planning her wedding next.

Harry Potter and the Cursed Child is releasing end at the of this month and that has kept me going for long [OMG, I think I am going to hyperventilate into excitement on this]. Also, Sherlock season 4 will be out next year. Little objectives to look forward to, help me plan my life in short spans and not keep falling into the black hole of how long will I live? I have enough to keep me going.

So as I am celebrating my second anniversary in the cancer universe, I am only smiling and looking back with peace in my heart because I am alive and healthy and the more anniversaries I celebrate, the more cancer loses.

Will you celebrate with me?

bravery, cancer, discovery, health, strength

How to interact with a Cancer Warrior

Posted on May 14, 2016June 17, 2016 by LetsTalkCancer

“You will get through this. Not because you are getting treatment, but because of the person you are.”

“Not everyone would have accepted this illness and fought it the way you did, you are an inspiration to all”

“You look beautiful. Your hair doesn’t make you who you are. Your heart does”

“Sunshine Girl”

“You smiling through your disease helps us deal with it better”

“When you got diagnosed a lot of lives changed. We are all in this together and with you right till it all goes away”

“You are in our thoughts and prayers always.”

Positive reinforcement is always fantastic to hear and I have been blessed to have received an immense amount. It helps us warriors get through tough days and sometimes the words spoken can be exactly what we need to hear.

However, from your perspective, it can’t be easy to respond to the news of a loved one being diagnosed with cancer. Ones instinctive reaction is to let their own fears takeover, but most often that isn’t what a new warrior needs to see or feel.

How one responds to news and acts spontaneously is of utmost importance. So as a resident of the cancer universe, I thought I could assist you in dealing with your own emotions or certain situations better while you support your warrior.

Of course this is only my perspective and each warrior responds differently, but I hope it benefits you nevertheless.

1. Chronic Disease not Terminal:

Cancer is no longer considered a terminal disease. Warriors live with cancer and they can function fine. There are numerable other diseases that are incurable but cancer fortunately has many treatments available. So yes, it is a tough journey but it doesn’t always have a negative conclusion.

I don’t know when my cancer will go into remission. It probably will or won’t, but that’s not going to stop me from planning the next fifty years of my life. Yes, I may stay on treatment always, but people with many other diseases have to live like that too.

Hence if you hear of somebody’s diagnosis, don’t let fear of death cloud your emotions.

2. Precaution not Paranoia:

When a warrior is diagnosed, the support group can get paranoid while caring for them. Everything is new and unknown, the oncologist has given a long list of restrictions along with a longer list of side effects to treatment. You will want to avoid as many of them as possible therefore you may over care.

I remember when I was diagnosed and told not to be in crowded places, I was literally not allowed outside my room. Not more than three people could see me at a time and that was permitted only if everybody was wearing a mask.

Maybe that is required for some warriors, but I was fortunate that my body accepted the treatment well. Therefore, after some tantrums from my end, counselling from nurses and experience, my loved ones and I reached a balance of caring with precaution not paranoia.

Observe how your warrior is responding to treatment and don’t let your nervousness limit them.

3. Gauge your emotions:

The reason I can battle cancer with strength is because nobody cries or acts weak in front of me. My support group is very matter of fact about my illness and we have normal conversations. Emotions on the topic from their end are kept to themselves. But that helps me; however, for another warrior your tears and responsiveness may be therapeutic.

Therefore gauge your emotions and behavior around those in treatment. Also, this needs to be done each time you are around a warrior. Our own mood can be very erratic hence your emotions shouldn’t burden further.

Some days I am happy to cry about my cancer with a friend but other times I have cut off from well wishers, because their perturbation was too overwhelming for me.

4. Take permission before sharing information:

When we know a cancer warrior and receive information about the disease, the impulsive reaction is to share it with them. And you should!

It helps us gather points on how to care for ourselves while taking away the responsibility of finding the information single handed. However, it’s polite to seek permission before you share.

Sometimes information can be overwhelming, or on a good day we want to pretend like we don’t have cancer at all, or perhaps we just aren’t prepared for a WhatApp or email link bursting to tell us something good or bad about the disease.

5. I have found a cure:

You may know an oncologist or person providing alternate treatment who has cured other warriors, but each persons genes are different therefore what worked for one person may not necessarily work for others.

So as much as one may appreciate your concern, please don’t say you have found someone who can cure cancer. Cancer is complicated. What you could say is, ‘I know this worked for somebody, would you be interested to know more? I can connect you to xyz and you can take it forward if you like. After that let the decision be theirs and try not to keep following up.

6. Respect a warriors thoughts on God and Spirituality:

As I have mentioned in my earlier blog The Good Side Effects of Cancer, many warriors discover or divorce God during diagnosis. This is a long, lonesome and personal journey, therefore do not preach if you think a warrior is upset with God. Even if it is offensive for you, respect their emotions.

7. Respect the morbidity:

Despite everything I say in my blogs, the first reaction when I was diagnosed was ‘tik tok there goes my clock’… and morbid thoughts come from time to time.

It can be difficult to hear a warrior talk about their death but be strong and listen to us. You don’t have to say anything. One hug at the end of the conversation is all that is expected of you.

8. Motivate on Vertical Days

I learnt this interesting concept from a fellow warrior when I entered the cancer universe. She said ‘Sonia, I have two type of days, vertical and horizontal. The days I am fine I am vertical- up and running and the days I am not, I’m horizontal- sleeping on my bed’. It’s been the easiest way to explain to family how I am feeling each day.

On a vertical day, treat your warriors as you would pre-cancer. Don’t be over-cautious around them. Let them move around, cook or do something interesting. Motivation sometimes needs to come from our support group. As mentioned in my first blog – Cancer Warriors, it is easy for us to stay in bed and feel sorry for ourselves, but if you see that a warrior is doing fine, push them to do better.

9. Bald is beautiful but don’t lie:

Cancer alters a warrior’s looks. Yes, we brave the changes happening to our skin and the loss of hair. It is also very nice of you to say that we carry off the look well or still look good. But it ok to agree with us and say “we miss how you looked too”. Don’t be rude, but unconditionally complimenting also doesn’t help because we may have cancer but we haven’t turned blind.

10. Be consistent in your support:

When I was diagnosed, my house was filled with people like it was a Grand Indian Wedding. Almost two years later I can count the number of friends and family still involved on the fingers of one hand.

That is ok. My treatment has been going on since sometime and people get busy with their lives. But that isn’t the case for everybody, therefore if you tell your warrior that you are going to be a part of their support group then ensure you stick around.

Maybe discuss responsibilities- that you will come for chemo with them? or maybe bring food or babysit their pet? But be there if you say you will.

If stepping away is your only option, then talk about it and inform your warrior or their support group. It’s politer than drifting apart because your absence will be noticed.

11. Create your own support group:

Taking care of a cancer warrior can be intense. Keep a support group for yourself where you can share your emotions too. Your warrior may not be your best counselor, so let your friends and loved ones get you through your tough days.

12. It’s ok to ask questions:

I didn’t know anything about cancer when I was diagnosed and I realize that most people don’t either. So I am happy to tell them whatever I can from a science and emotional perspective. However, a basic research from your end would be helpful so the questions asked are mindful and respectful.

For example: If you are going to ask me what stage my cancer is and I answer stage 4, don’t give me a shocked look. Stage 4 cancer does not mean terminal cancer. It just means it has spread to many parts of the body.

13. Develop an appetite for intensity:

Till I am positive, cheerful and hunky dory, I have a lot of people around me. The day I am feeling morbid or grumpy, not so many. Of course nobody wants to be around an unpleasant person but hey, I have cancer! I’m allowed this much. So be strong and hear us on our tough days.that is when we need you.

14. Strength is contagious:

When you interact with a warrior, do it with all your love and positivity. Be a catalyst of strength.

If you can keep these thoughts in mind, you’ll make a splendid support person. You don’t have to remember everything but if you have grasped the emotions then you’ll work your way through very well.

Qualitative treatment is developing and we are all still grappling with ways to deal with cancer. So I thank you for having the best intentions for us warriors.

If any other cancer warrior is reading this or if you, as a support person, can think of points to add, please comment below. It would help us all.